Difficult Times for Mommy

"When a man loses his wife, he is called a widower.
When a woman loses her husband, she is called a widow.
When a child loses her parents, she is called an orphan.
When a parent loses her child...there is no name for this type of pain...
It is hard to live and has no name."
~Major Bloomberg

Thinking of my Eli...the only day, the only set of pictures where I held both my babies...

I love you and miss you desperately angel baby Eli...do you miss Mommy?

A Very Bright Boy

My little sweetness…how did I get so lucky? With all that has been going on in my life, I cannot be more happy to have my husband and precious baby boy Joey in my life every day.

Joey has been in therapy for a little while for basic developmental skills he may be struggling with due to his prematurity. Just recently, he has also started therapy for his visually impaired issues and he did great. He sees two VI therapists, one for basic coordination…things like touching, feeling, writing later on. His other therapist will work with him on transportation which right now involves getting Joey to lift his head so that he can eventually get into the crawl position. He’s struggling there mostly because there’s not much incentive. It’s hard to lift your head and he can hear everything just fine from the ground. We work on this but at his pace.

Some of the sweetest moments have caught me by surprise lately. I left Joey with his Daddy so I could wash and prepare bottles for the evening and when I came back in the room, Daddy was very meticulously helping Joey feel the edges of these shapes on a puzzle. I mean, I work with Joey off and on during the day, but to see Daddy take such initiative and he was so gentle and loving, well, it was a precious moment that made my heart melt. You really can fall in love with your husband all over again by simply watching him love your baby. He works so hard for us and then goes to law school at night so sometimes, he has to catch up with Joey through video and I know how hard that is for him. Joey has been feeling our faces a lot, especially Daddy’s face. He likes the scratchy beard. He also likes the rough side of Velcro so that makes sense.

The other day I was having a moment where I was really missing Eli. A lot of things piled up on me and I was just sobbing and here was Joey, just playing with the crinkle worm toy I had in my hand. Through my sobs, I was telling Joey how much I loved him, how much I missed his brother, how sorry I was that his brother wasn’t here and how I felt like I wasn’t a good mommy because I was crying right then. I kept telling him, “Mommy will do better, Mommy will do better,” and through all of this I was changing his diaper. He likes to kick (it’s his new favorite thing) and he just starts kicking and cooing and all I could do was giggle through my tears. Those are the best laughs sometimes, the ones that happen in the middle of a good cry. So I picked him up, held him tight, rocked him back and forth and told him I loved him so much. This of course also made me cry. I was already emotional and loving moments like this really get to me.

Now that Joey has been approved for his program, I will start getting respite help during the week. The program actually pays someone to come to my house and help me out, either by allowing me a simple nap, letting me go to the grocery store, do some cooking. I actually found out that they can clean for me if I want, whatever I need. It’s so generous and to be honest, I don’t know what I need. I think it will take me some time to get used to it and so in the beginning, she may just follow me around or chit chat with me. Adult conversation is rare. I just have to be careful to stay on task.

Next week Joey has his pre-op appointment for his (hopefully) last surgery. It makes me so nervous because surgery is so hard on him, especially the anesthesia. But it must be done.

So attached are pictures of his therapy and there is also a video so you can see this very bright boy in action. He really is very bright and my saving grace.

Seeing Clearly

Sometimes I can just stand there and look at my baby boy while he sleeps and suddenly be filled with so much love and compassion that it just makes me cry. I have never known love like this. Joey knows it’s sleep time because we play his lullaby music with his beach sounds. We used to turn on his light mobile but we don’t do that as much. He also knows because I can swaddle him like no one else thanks to being taught by some brilliant nurses at Texas Children’s Hospital.

He sounds like Darth Vader sometimes when he breathes and he snores at night. We saw a pulmonary specialist last week and were told that his lungs are fine but we were referred to an ENT for this coming week sometime. They want to stick a camera up his nose. He will of course hate this. Last week we were also visited by the Visual Specialists from the school district we live in. I had been previously speaking with one about whether Joey should get glasses this young. When she arrived, she had some unsettling news for me.

You see, I don’t know where the misunderstanding took place but as it is, Joey will be visually impaired, blind. We were not expecting this although it all makes sense. There have been some instances where I felt like he couldn’t see what was going on. For example, a few times on his changing table when I would reach away to toss his diaper, I would see his arms go up an out and terror would spread on his face until I grabbed his little hands, got right in his face and said, “Mommy’s here” over and over. This would happen quickly so I convinced myself he was just near sighted.

I have noticed that he doesn’t squint in the morning when I pull the curtain back to let the sun in. And I do this when I change him in the morning as the table is right next to the window. But I decided that it was because he was awake. But there were also times that I felt like he was looking at certain toys. It always seemed like he was partial to this little yellow duckie.

But when the Vision Specialists were here, they read aloud the eye report (something I had not received) and his professional opinion was that Joey was blind. I just kept tearing up and the women were so kind, a little shocked that I didn’t know. It all made sense though.

I asked so many questions. Fortunately, I live in a district where they step in immediately to provide therapies and get him started right off on things he needs. For example, he no longer works very hard to lift his head up when he’s on his tummy. He has no incentive. He used to do it to see Mommy but he doesn’t need that anymore so he hasn’t been trying. This really started after his last eye surgery. I suppose that the eye they operated on was his “good”eye and in an attempt to save it, they had to risk blindness sooner. It was already detaching though so it was inevitable.

Now we have to find incentives that motivate him to lift his head or he won’t crawl or walk. He will be very behind developmentally regardless but we want to help him as much as possible to overcome this. He also drops his head down and he will need to learn to hold his head level so we work on this often.

I had so many questions for the specialist like…should he go to a blind school? What will they teach him now? Will they teach him Braille? Will they teach him to use a cane? Will he be able to ever live on his own? Will he have friends who aren’t blind? Will he be in regular classes or always special classes? What kind of future will he have? Are there camps out there for blind kids? How will I deal with as a parent? How do other parents deal? Should we live in a one-story (if we can ever sell our house)? How will he get around? I should talk to him all the time, right?

The last few days have been filled with so many questions, thoughts, worries. Will he have a girlfriend? A wife? What kind of job will he have as an adult? What if he falls? What if he drops something important? What if he gets lost? So many worries…

I just love him so much.

The vision specialists were wonderful and so kind. They were so sweet to Joey and loved on him and when they left, one said, “Ok Joey, this is Miss Donna kissing your back. I’ll see you next week”. And the other lady clanged her bracelets and then rubbed them on his little arm and said, “This is Miss Elizabeth saying bye bye”. I just started to sob. They were so wonderful and although I know that they deal with this every day, it is new to me and scary. It is a scary road that I am just beginning to travel and I have so much to learn.

I told my husband that we needed to get him involved in music so he got him a mini Casio keyboard. Joey bangs on it for a bit and then gets bored. Babies’ attention spans are not very long. He ordered him some Braille blocks because even though he doesn’t know Braille, blocks are supposed to be helpful, especially the kind with different shapes that are pushed through holes.

A friend gave him a puppy that has a lot of different sounds depending on which arm, leg, ear, tummy you press. It sings songs and Joey likes it. He’s still very young but we play with it every day and I sing along with the songs…
“Head, shoulders, knees and toes (echo…knees and toes)
Head, shoulders, knees and toes (echo…knees and toes)
Eyes and ears and mouth and nose
Head, shoulders, knees and toes (echo…knees and toes)”

…and we touch all those body parts. That song seems to be in my head a lot lately. I strap him in my Moby wrap facing out and we walk around and I let him help me wash bottles or I hold his hands. He mostly likes to suck on my arm right now and that’s fine.

My favorite thing is when I kiss his lips. He sticks out his little tongue and wants me to grab it. He smiles and then sticks it out again. And again. And again. It’s so precious. Have you ever seen something so innocently perfect, so precious, so sweet that it just made you cry? This is one of those moments. I would do it for hours if he wanted.

This requires a lot of time. I cannot put him in a bouncy seat with a toy in front of him and then fold laundry. I talk to him the entire time. All day long. I do get tired but when that happens and I suddenly realize I’m not talking for a second, I look at him and this beautiful baby is sitting there so quietly…waiting. I wonder what he’s thinking about. Is he waiting for me to speak to him? Is he lonely? Is he worried I’m not there? Is he singing in his head? I will suddenly realize what I’m doing and jump down to him and love on him.

Kisses…lots and lots of kisses.

So here we are. My sweet baby boy who has been through so much cannot see. More than ever, we need to sell our two-story house. My husband e-mailed the expert in the field of ROP (Joey’s eye disease) but hasn’t heard back from him yet. My mom is looking into eye transplants but I suspect that this is the road for us. I don’t have time for anything but Joey. And it’s hard. I look at my house getting dirty, the clothes need cleaning, the grass needs mowing. And it will get done. All that is important is this baby boy.

I want Joey to feel safe, to feel loved and cherished, to feel that he has so many people around him that see him as a normal little boy and will play with him and hug him. I want him to know his family, to recognize their voices, to know their presence.

And I want him to have fun, to learn. This is all that he will know so as hard as I think it will be on him, I have to remind myself of that and realize that it will most likely be harder on me because I know what it’s like to see. I will find ways to motivate and stimulate him. We will play and laugh and lift our heads and crawl and dance and sing and hug and cuddle and run and be courageous. We will live.

I love him more than ever. And I am so lucky to have this beautiful baby as my son. And suddenly I can see more clearly than before. I can see what Joey has been trying to tell me all along. And he is patient with me. He is one wise little baby. Joey has such a sweet spirit and he is so unique and special and dear. Joey will succeed where people think he may not.

Joey has made things much clearer for me. I see things so different than before and I consider myself blessed. I haven't figured all of this out but in the meantime, I will love my baby and be his Mommy, his Mommy who he can rely on to be there every time he reaches for her.

A Hard Day

Oh boy…

Yesterday was an unexpected hard day. Joey and I went to the eye doctor. This is the eye doctor we saw in the hospital, not the surgeon he has been seeing. The surgeon released us after his last surgery and so we are back to his original eye doctor to hopefully keep his good eye well taken care of.

So I decided that I would venture all the way downtown to the hospital without help for the first time. It’s a long drive and so far, I have always had someone sit in the back with Joey when I have gone. But not this day. I was going to do it all by myself. I know it sounds silly. Moms travel by themselves with their new babies all the time. But I am still nervous. I think about his monitor going off while I am on the freeway. Could I pull over in time? I think about car accidents. I will drive very cautiously. And boy did I ever!

I was constantly aware of places I could pull over. I made sure his monitor was in the front seat so I could see it clearly. I kept putting my hand over his car seat to hold his hand, to feel his little squeeze. When I started out, it felt familiar. And my thoughts drifted to Eli. I started talking to Eli. I felt dark thought, angry thoughts entering my brain so I tried to turn them. I spoke out loud, feeling tears well up in my eyes, “Hi angel baby Eli, will you look out for Mommy and Brother today? Will you keep us safe and sound?”

The tears flowed steady but I didn’t sob. I just kept wiping them away. I started thinking about all the drives to the hospital, all the times I went to see the boys. I started thinking about when Joey was first released and how hard it was to leave Eli behind. I started thinking that he would have probably been home with us by now had everything gone according to plan. I remembered how we had originally had organized both car seats in the back and how now there was only one. I remembered feeling so excited knowing there would be two babies back there.

As we got nearer to the hospital, I found myself talking to Joey a lot. I was telling him how Mommy would come to see him and brother every day and how excited I would get when I turned onto Fannin. My heart would start pounding hard when I saw the tower of Texas Children’s and I knew I would see their sweet faces soon. I always missed them so much at night. This familiar feeling began to warm my body for an instant. I actually felt like I was getting closer to Eli. I forgot that he was gone, that he wasn’t there and for a moment, I was actually feeling excited, that old feeling of comfort, the feeling that I would see my precious angel very soon.

But then I realized what was really happening. My visualization was ripped from my head and the truth of reality stabbed my heart. I felt the hot tears streaming down my cheeks. Now I was starting to cry.

“No!” I told myself. I have to stop this, I had to focus on the task at hand. I was going to get through this.

So we pulled into the same old parking garage and I went to my same old spot. I told myself to park somewhere different but in the end, I didn’t. We went inside and upstairs to the 5th floor. There were already people there waiting in line and it was only 7:15AM. I always look at all the children at the hospital. They are so beautiful to me. They are usually all in similar situations as Joey, possible preemies that have ROP. I also look at their mothers. They always seem protective and there is a wisdom in their eyes. A wisdom of an experience that can only be understood by mothers who have gone through the same thing.

So I checked in and sat down. I watched mothers and children sit down. There was a family, a mom, dad, two sisters and their baby. I eavesdropped and realized they drove in from Beaumont for their appointment. There was a precious little boy, around 6, very thin and he had very thick glasses on. He was so outgoing. He had bonded immediately with one of the sisters from Beaumont and they were sitting together watching Madagascar. The girl got up to get a book and this little boy had so much to say about the book, about the movie. I wasn’t listening to what he was saying, just watching him. He was protecting himself from his fear of the exam by staying busy, very busy and distracted.

I looked down at Joey and he was sleeping. He was such a sweet boy, a good boy during his drive. I got him close to me and gave him lots of kisses. Then the mother of the thick-glasses boy called to him and said, “come on, we’re going in”. The boy was very close to me and he looked at her and said quietly, “we’re going in. ok”. He started to follow her and then slowly just sat down in a chair as if to contemplate what was happening. I wanted to go to him and comfort his worries so desperately. But instead, his mother walked up to him very aggressively and said, “Boy! I told you to come! You better come when I tell you!” He got up and scurried after her, fear in his eyes.

My heart just broke and I began to cry. I felt such sadness for that little boy. He was just a child and had probably been through so much. And here was this mother who may have had a hard heart, or maybe she was sick of it all, or maybe she was having a bad day…but this was only a child. And I knew that no matter what, I would always be compassionate to my sweet babies’ worries. I knew that we would be spending a lot of time at doctor’s appointments and hospitals and I always wanted him to feel safe and reassured and loved. I imagined her kneeling down next to him and telling him it would be ok, that she would be by his side the whole time, that she needed him to be brave so they could make sure his eyes were ok. I imagined him giving her a hug and then the mother standing up, holding his hand as they went to the exam. I wished that had happened, I wished I hadn’t witnessed what I saw.

I don’t know all the circumstances behind that situation but I knew that more than anything, I wished I had Eli. I used to worry that Eli would have a lot of problems, a lot of issues to overcome. I knew that we would do it together as a family. I knew Joey would have issues too but I thought that as long as they had each other, we could all encourage each other. They would both be there at doctor’s appointments, there to love each other, there to support each other. And now, Eli wasn’t there.

I just sat there in my own little world, in that chair, in the hospital where Eli died and I cried tears. I wasn’t sobbing, I was just shedding tear after tear and wiping each one away. I didn’t want anyone to see me, to feel sorry for me, to wonder why I was crying. I was going to get a grip but I needed to let these tears fall. They were tears for Eli, for that little boy with the glasses, for Joey…for me.

Just then a nurse came by and asked if I was Joseph’s mom. That always sounds so strange when they call him Joseph. He’s Joey! Or Joey Bear. I said yes and she asked if I was ok. I said I would be fine and managed to mutter through the words, “Joey’s brother recently passed and I’m still having a hard time”. She managed to say she was sorry through her indifferent tone, one I have become accustomed to time and again when people catch me in tears at random places and times.

In the exam room, she was unable to find Joey’s file on the computer which seemed strange to me since he was in the hospital for 4 months so she asked a lot of questions about his history, his brother’s history. I kept telling her that this doctor knew Joey, had done two laser surgeries on him and I cried through the family history questions she had to ask about my miscarriage, loss of a child, no living siblings for Joey. She responded by handing me tissues and insensitively slamming cabinet doors that startled sleeping Joey. She said she wasn’t used to sleeping babies as she put eye drops in his closed eyes repeatedly.

She left and I sat with Joey watching him sleep. It seemed like ages before she returned to inform me that she still couldn’t find his online file but that the doctor had overheard her and sent his nurse to his office to get Joey’s file. She assured me that this meant he obviously knows my baby. Duh.

The doctor came in shortly thereafter and he is such a kind man. He shook my hand hello as I hadn’t seen him since before Eli passed away and he held it softly and then lingered a bit. I felt his sorrow for me and it comforted me. He didn’t say anything like, “I’m sorry” and I’m glad about that. I didn’t want it at that moment for some reason. He examined Joey, who hates his eye exams so much and asked questions about him, about how he had been. He told me that the eye surgeon had kept him updated consistently so he knew about the blind eye. He was wonderful. At the end, he gave me his cell phone number in case I had any questions or concerns. We wouldn’t see him again until Joey was 1 year old, to do a retraction test on his eyes. That’s when we would decide if he needed glasses.

The drive home was equally hard as I went through familiar places and roads. It was a long drive. It was a hard day. I’m glad it’s over and as I drove into the driveway I said, “Thank you angel baby Eli, for watching over us and helping to keep us safe today.”

(pictured is Angel Baby Eli)

Sweet Kisses

Awwww…kisses.

Who would have ever thought how special they would be? There are so many types of kisses…romantic kisses, friendly kisses, kisses on the hand, kisses on the cheek, a kiss hello, a goodbye kiss, air kisses, kisses from across the room, kisses to heal boo-boos, kisses to say thank you, kisses in your dreams, movie kisses.

But I have discovered the best kiss in the entire world lately…kisses from my sweet baby boy. They are heavenly!

Joey is becoming more outgoing every single day and I have never loved like I love him. I just can’t stop kissing him…on his head, his hands, his feet, his cheeks and even some smackers on his lips. Joey responds so sweetly. When I give fast little kisses, he responds by going “mwah” right back with a big open smile. It is the most precious time ever! I will literally kiss him over and over to get these “mwah”-smiles for hours if I can.

Another kiss we do is the nose kiss. I will rub his little nose with mine nice and easy and at the same time I say, “dee dee dee” really soft and high. He gets so quiet and looks right at me. The other night he was swaddled in his bed ready to go to sleep but was restless and looking all around. So I got down and did nose kisses and he just looked and looked at me. He would turn his head from one side to the other so that he could keep getting more kisses. It was almost as if he were trying to do the nose kisses himself.

Sweet Joey is getting so big! And he is a happy baby, very funny. We went to a funeral last weekend for a dear departed family member. I will be honest, I was nervous about the funeral. I was nervous that it would bring back sad memories of Eli’s Memorial. We sat in the back and I held Joey in my arms and it began….

I have always thought Joey was a quiet baby, a sweet baby that coos and has alert awake time. In the quiet of the church, in the seriousness of the funeral, Joey began his “noises” as usual. He began grunting and cooing and was so loud. It actually made me giggle and I felt terrible! I wanted to mourn for the loss of this incredibly special family member and then I realized that Joey was giving me just what I needed, he was giving me a break. He was letting me breathe, keeping me from misery and allowing me to see the life in this loss.

You see, I had to get up and I stood out in the entry way while I fed him and he grunted and cooed. There were pictures of this wonderful woman who was in a wheelchair and she was white-water rafting, she was climbing mountains. I felt inspired. I had no idea. I’m not real sure I would have seen these pictures if I hadn’t left the church area.

In the end, I realized my little boy was not as quiet as I had thought and I came back inside just as they were mentioning prayers for Baby Eli. It made me smile.

Eli. I have been missing him so. I started grief counseling with a Christian counselor and he’s a really nice guy. He suggested I come twice a week and I’ve been several times. I’ve realized a few things so far but we both think I am between Stage 1 (shock) and Stage 2 (anger/blame) of the 5 Stage healing process. I miss Eli all the time, I think about him all the time. Sometimes when I cuddle with Joey, I imagine that he is there too and I reach out my arms as if to cuddle two babies. It’s been hard for me. Sometimes I imagine that they are swaddled right next to each other. When we took Joey’s pictures the other day, I saw samples of twin baby pictures and imagined my babies in pictures together. They were never really in pictures together except right before Eli died and Eli didn’t look himself then.

My sweet angel baby Eli. I miss him.

And of course little man Joey. He’s been so congested lately. We’ve been using a humidifier and I hope this goes away soon. The pedi says it’s ok, that it’s normal but I don’t like it one bit. I am the Thermal Regulator! I take his temp all the time. I worry about him getting sick all the time. I just want him to feel good. This week, he sees the eye doctor and will most likely be getting glasses. I dread the eye doctor but have decided to venture driving downtown to his appointment all by myself for the first time. I usually drive with my arm over the top his car seat holding his hand. If I can feel his squeeze, I feel better, although it’s very uncomfortable. Sometimes you have to give up one comfort to get another, right?

We had one person look at our house and they liked it but they were just beginning to look around and I’m sure there are great houses out there much cheaper (foreclosures). We are trying to avoid that but it’s looking more and more like that may happen. Sigh….stupid recession.

Joey, Joey, Joey…the light of my life, my starshine, my little monkey, my sweetie bug, my punkin pie! I love to give him kisses and I am so glad that he is kissing me back. His little neck is getting stronger every day and he is eating like a piglet at times. We went a day and a half without a poo and I was worried but then it allllll came back to normal…and then some. He is excellent at poo-poos. A real champ!

He is so friendly and social. He loves to smile and loves attention. Right now, this is taking me a long time to write because he keeps kicking me and demanding attention, which of course I give to him. He makes “mwah” noises at me or will grunt really hard or breathes fast and then kicks out at me. In the mornings after we wake up and eat a bottle (not me, him), we will cuddle together. Sometimes he will go back to sleep for an hour or so. The other morning, he was not having it. He was hitting me in my face, kicking me, cooing at me, anything to get me to wake up and give him attention. I loved it and was so impressed. He never got angry either, he was so sweet and cute.

Kisses. Sweet Joey kisses. I could kiss him all day! I kiss his feet, his hands, his belly. He’s the most precious little boy, so loving. I’m so blessed.

6 Months Old!

My sweet little boy is 6 months old today! Oh my gosh!

Poor little Joey. The past four nights he has woken up screaming in terror. It has been shocking and what’s worse is that he cannot be consoled. This is heart wrenching! I rock him and sing to him…doesn’t work. I give him kisses that he normally loves…doesn’t work. I put him in his swing, strap him in, start it, give it a push, stare at him holding my breath. “Please work, please work, oh God, please work!” Doesn’t work. Unstrap the baby, pick him up, hold him close, “oh sweetie, I’m so sorry!” I sing to him over and over.

We try the bouncy seat, maybe the vibration will help. Put him in, strap him in, turn on the vibration, turn on the music. Wait, hold my breath…nope. Not working. Oh my gosh! It’s killing me! My poor sweet baby!

Is he hungry? No. Is he scared…doesn’t seem to be. Poopy diaper? No.

So yesterday we had our well-baby appointment and I tell the doctor all about it. He asks…is he drooling a lot? Why, yes he is. Is he putting his hand n his mouth a lot? Why yes. Any low grade fevers? Yes. I’m sure if you are reading this and you have children, you know where this is going.

He’s teething. Darn. Poor baby. It’s supposedly going to be like this until he is two years old. Poor little boy! I did finally (after 2 and ½ hours) find something that helped him. He likes to lay on his tummy on the boppy alternating between gnawing on his hand and the fabric while he leans on me and I pat him on his bottom. And he doesn’t fall asleep during this time, he just likes it. It’s a killer at 1AM but at the same time I think to myself, “there’s no place I’d rather be!”

So here we go…teething time. I’m up for it and I have lots of tricks up my sleeve for this ride…cold things to suck on, washrags, maybe Baby Orajel in the future…I have plenty of ideas because I scoured the internet. Hopefully, I can make this as easy on him as possible.

So his well-baby appointment was interesting. The doctor wants him to start seeing a Pulmonary specialist. Joey has been through the ringer since birth with ventilators and lung issues. I remember when I was told his lung might pop because it was so over-inflated. They had to put him on a special oscillator and because he was fighting it so much, they had to paralyze him for 9 days. It was awful!

And with RSV season coming up, the doctor is very worried. I was unfamiliar with RSV so allow me to explain what I know. Apparently, it’s out and about during the fall and early spring. Most adults can carry it with no symptoms because we have a strong immune system. Babies are very susceptible to it because of their low immune system but preemie babies and especially babies who have ever been on a ventilator are most risk for it.

It is passed from person to person and if a baby gets it, it becomes very difficult to clear up. It can cause pneumonia, lead to further lung issues and hospitalization and eventually, the ventilator again. Our doctor stated specifically that lungs can “pop”. This is very bad news for a preemie baby who suffers from chronic lung disease. He absolutely cannot be anywhere near cigarette smoke or anyone who has been smoking. Apparently, third hand smoke is just as dangerous to Joey, the doctor says.

He will get a shot next month that will help him but I was told that he will need to stay indoors, basically live in a cave during RSV season. This begins in September and ends around March. And it’s important for the caregiver to do the same. I mean, I can go to the grocery store but avoid people and come straight home. No parties. No big get-togethers because remember…adults carry it without any symptoms or symptoms that look like simple allergies.

This is scary. And a little sad. There’s Thanksgiving and Christmas, his first ones. BUT, Joey is the most important thing and it’s Joey that matters and so we will do what is best for Joey! Maybe some small family get-togethers but only under very strict circumstances, doctor’s orders! I don’t want anything to happen to him, especially if I can prevent it and/or help the situation. I only hope everyone understands.

And of course this means no big 1st birthday party (sad face). Sigh…

He’s been congested lately but the doctor says it’s normal for babies. I don’t like it and he definitely hates the nose suction and nose drops (Baby Ayr).

Now that the retinal specialist has released him, we will start seeing the eye doctor for his right eye. It’s probable that he will get little baby eyeglasses soon. Say it with me now, ahhhhh…….

And next month, he will have surgery for his hernia and circumcision. I hate the idea of surgery, it scares me to death and I am very anxious about being back at the hospital. It stirs up such band memories.

Joey is doing great in therapy, he seems to be moving his neck well and holding his head better and better. He is favoring his right side (which is to be expected since he can’t see with his left eye) so we are working on techniques to help that. We lay him on the floor and try to get him to follow a toy with his eye. And I have to hold his head center and then twist it right, then left, then sideways both directions. What’s funny is that when the therapist is working with him, he has no fear and works so hard as if he is showing off. At the pediatrician’s office, he gave him nothing. He was not having it and what Joey wants, Joey gets. Joey is always really good about straightening his legs all the time. But he just would not do it for the doctor.

At the end of the month, he goes back as he will be 7 months old and we will decide if he will start on some solids. Wow! I can’t believe it! He has outgrown all his preemie clothes and barely fits some of his newborn clothes. He is fitting into 3 month clothes and it’s just crazy. He weighs 9 pounds 14.5 ounces. He’s such a big boy!

Poor baby had to get 2 shots and it was awful! He was screaming like crazy, real tears were flowing and the nurse lost the bandaid so she left to get another one and I couldn’t pick him up because he needed another shot! So while he was screaming, he got another shot. He was crying so hard that no sound came out of his little angry face and he was just red and tears were flowing. As soon as that bandaid was on, I scooped him up so fast and held him so tight. I told the nurse that I would leave when I could but I was going to comfort him. I was not going to put him in his carrier in that state and she said it was fine. It took about 10 minutes. I almost started crying myself.

I have decided to start grief therapy. A friend of mine referred me to someone and I got a really good feeling when I called. Instead of a voicemail or answering service like with most therapists, a receptionist answered and she was so kind. I asked her if I could bring Joey if I couldn’t find someone to watch him and she said, “of course!” After I assured her that after a car ride, he usually just slept in his carrier, she said, “well if not, it’s no problem, you can leave him with me out here and I will watch him.” Is that not the nicest ever?!?! Fortunately, my mom is coming that day to watch him so it works out. But it’s comforting to know there are options. I have really been having a hard time lately and I’m hoping this will help. He’s a Christian counselor and has gotten rave reviews from a friend who lost her father.

So this is where we are…sweet Joey is 6 months old today! What a journey he’s had so far! I love him more and more every day and I just cannot believe how big my heart seems to keep on growing!

Our Story...How it all began

For those of you who have been following our journey, you know the ups and downs our family has gone through beginning on February 4, 2009 with the birth of our precious twin boys, Joey and Eli. After surviving the best and worst 6 months of my life, I have decided that I need a fresh start. But for those of you who are new to our story, I will try to summarize our history so that you will understand why I decided to begin a new page, one that will hopefully lead to healing as I struggle each day to live my life, a life I did not plan for, expect or ever even slightly imagine to exist.

My boys were born early, 25 weeks. There was no explanation for it, I wasn’t sick, I didn’t have gestational diabetes, I didn’t have high blood pressure. In fact, I was pretty healthy, I taught dance and a competitive drill team and had been taking it easy the previous semester. My husband and I had been trying for years to get pregnant and had lost one baby at 9 ½ weeks which resulted in a D&C procedure. We were ecstatic to find that we were pregnant with twins and even more shocked and thrilled to find out we were having boys.

I was expecting to be put on bed rest and during a regular check up, was told I was dilated and was immediately hospitalized for what should have been 9 weeks but only lasted 6 days. My sweet babies wanted to come early and Joey was born weighing 1 pound 10 ounces and Eli was born weighing 1 pound 7 ounces.

About a week after being born, we were told that they both suffered from bilateral grade 4 IVH (intra ventricular hemorrhage), the most severe brain damage. We were told that their lives would be difficult, possibly not worth living. We were told that they may be vegetables, crippled, have cerebral palsy, not speak…so many things. We were devastated but we prayed and believed that God would protect them, that they were born to serve him and lead a life with divine purpose.

Oh what they went through! They both had PDA’s (heart clips). Joey had severe lung issues that required him to be paralyzed and placed on an oscillator for 9 days. Eli had a jejunostomy that ended with his intestines attached to the outside with bags. His recovery was terrifying and we were told that he would die twice. We were told that it would be best to take him off support as if he did survive, he would be a vegetable. With the help of many prayer warriors, Eli and Joey transferred to Texas Children’s Hospital and not only survived but grew stronger and stronger every day. Eli had become a miracle baby! They were both miracle babies!

Their personalities grew and grew and they were both very different, but they were most definitely not vegetables. They were beautiful baby boys, my baby boys and they recognized me. I loved them so much and knew them well. I contributed in doctor’s rounds, assisted with care when allowed, held them for hours at a time, nurtured them and missed them each evening when I had to leave. Joey was growing to be the sensitive one. He wanted love when he wanted it and wanted to be left alone when he wanted it. He hated dirty or wet diapers and made sure everyone knew when it was time for a change. He was a fighter, so strong and determined. Joey had a bit of anxiety about things but he got that from his Mommy. Eli was the chilled out baby. He put up with so much. He loved people and was very social. He would hold his foot in the air to be pricked for blood samples. He loved to look at pictures, to hear stories. He was so bright and friendly, he had won everyone over with his charm. He was a precious little punkin. And I believe that it was his chilled out personality that helped him survive through all he had survived.

All the while, my sweet husband was trying to go to work during the day, law school at night and visit his sons after school as much as possible. He did a great job and was an excellent father! Unbelieveably he finished the semester only having to drop one class and still making excellent grades.

There were good days and bad days. I spent all day every day with them at the hospital, sometimes 12-18 hours. There were nights when I stayed all night in the Ronald McDonald House and there was no place else I wanted to be. I held them, loved them, dreamed of their homecoming. After being told that their lives would be difficult, that they would most likely need therapies, home treatments, extra care, I decided to resign from my teaching job that I had held for 12 years. It was a very difficult decision but the boys were the most important and I was so relieved that they had each other because I knew that they would be there for each other, there to support and encourage their brother and I was going to be their biggest cheerleader.

They moved closer to coming home when they were brought from Level 3 NICU to Level 2 until one day when Eli crashed unexpectedly. He had contracted a rare hospital infection that took weeks to rid from his body. And then we found out Joey’s eyes were not good. He went through 3 eye surgeries while still in the hospital. And he received a shunt to relieve the hydrocephalus in his brain. Joey was a fighter and handled it all with a little anxiety, but overall, very well.

During Eli’s time of recovery, his brother Joey was released home. It was bittersweet as we were ecstatic to have Joey home but my time from Eli was taken as they were in two different places and we had to adjust to caring for Joey, his doctor appointments and visiting his brother. I was determined to make it happen and I did!

Eli went through his surgery to reconnect his intestines by our favorite surgeon. This surgeon had performed 5 of the 10 surgeries on the boys and we grew to love and trust this very kind amazing man. The surgery went great! Eli was such a trooper. I was so proud of him and believed that we were about 6 weeks shy of him coming home too.

But then it happened. Eli had developed another infection from the antibiotic he needed for his last infection. And this was just after his surgery. His kidneys were already in bad shape and were not functioning well. I just knew in my heart that he would survive. I sent out prayer requests and believed. My faith was unending.

After about 4 weeks though, my beautiful sweet precious Eli’s body couldn’t hold out anymore. I remember the day so clearly. I whispered in his ear that it was ok, that he could go to Jesus. I told him that I knew he was holding out for Mommy because Mommy had asked him to fight. I told him that Mommy would be ok though, that if he was a tired little boy and needed to rest, it was ok now. He could say goodbye.

I knew.

I knew that he was going to leave me that day so we called our family and let them know, the grandparents came and said goodbye. We spent time as a family with Joey and Daddy and Mommy and Eli. We got pictures of the boys together, although Eli did not look like himself. It was heart wrenching. I sent Thomas and Joey home. My expectations were that I would stay next to Eli’s bed all night. We would sing, read, talk. I would call Daddy as soon as it was close and he would come back leaving Joey with the grandparents.

But I started to feel it coming. I watched his heart rate, I was good at that. I could sense his weakening state. I felt Eli speaking to me. I had the nurse call my husband. I told them I wanted to hold him. Once he was in my arms, my husband arrived. I held him close and told him it was ok. I asked my husband to put a sock on his cold hand and I saw a small jerk. I knew.

In my heart, I knew. The nurses were having some problems with the heart probes and called for the doctor but I knew. And the doctor confirmed it. Sweet Eli who always loved to be in my arms waited to be there, died in my arms.

I thought I was prepared, I thought I was ready. But I wasn’t. I wailed. I cried, I sobbed. I hugged my baby. I cried out his name, cried out, “my baby, my precious Eli, my sweet little boy!” It was the worst moment of my life. I realized that Joey would not have his brother, that they would not have each other to encourage through their struggles. I realized that I, his Mommy, would not be blessed with the presence of this very special boy during her physical life.

It was devastating. We bathed him that night very carefully and then we both held him again. I sobbed. My heart was broken.

We had a beautiful Memorial to celebrate Eli’s life and so many people attended to show their support. That first week after Eli’s death wasn’t as hard as I thought it would be. I was so busy planning the Memorial that I didn’t realize my own heart pains.

I became obsessed with Joey and his eyes. He had a 4th eye surgery for a detached retina and in the end, they could not save his eye. His left eye will have no vision. Another disappointment, another hurdle for Joey to overcome. His right eye, well, we are not sure about yet. He may just need glasses and that is what we hope for.

What I have come to realize is that my heart is heavy. I have tried to pretend that I am ok. I have had to pack up so much of Eli’s belongings. We got a beautiful trunk for all his things. And we have so much twin stuff. It’s so hard. I keep pushing it in the baby room, pretending it’s not there. I wanted my family and friends to understand and have faith in me, to know that I would return to my old self eventually. I’m still not there though.

Sometimes I pretend to be there. The other day I was driving home from an errand with Joey. It was early evening, 7:30pm and the sun was in the same place, the weather was clear, the roads were just empty from traffic. It was the same road I had travelled so many times, the road home from the hospital, home from seeing Eli.

And I began to cry. I told Eli that I missed him and aske dhim if he missed me. I asked him if he would just send me a sign that he missed me a little, that he remembered me, that he knew we were here thinking of him. I suppose he was busy in heaven that day, or perhaps I missed the sign. Maybe God knew I couldn't handle it at that moment and wanted me to concentrate on driving. I have moments like this often.

For the most part, everyone has really stepped up to the plate and been there for us, for me. I needed love and support so desperately. And fortunately, there are new friends and old friendships rekindled that fill a few voids I felt.

I find that I cry a lot and I suppose this is normal. Eli died when he was almost 5 months old. I knew him well, knew his likes, dislikes, his personality. I loved Joey and Eli more than anything, loved the dream of “them” and have had to change my “dream”. I have been forced to come to terms with what I did not ever want or imagine. And it has been the most miserable time of my life. Eli has been gone physically since June 22, 2009 at 9:40PM and as time has gone by, my heart has grown heavier and heavier.

So here I am…

I’m starting fresh. I’m going to try and heal, allow myself to grieve and believe that my new dream does exist and that I can be happy again without sad thoughts of Eli haunting me on a daily basis. I have seen the good and bad in people, I have been judged for my “behavior” as I experience the loss of a child and I have realized who loves me and my family for the realness that we have tried to share with all who are interested.

Many have followed our journey so far and now it is just the three of us physically. I know Eli is there too in spirit and I just…

I just miss him so.

It’s difficult to summarize 6 months of feelings and emotions into one blog. It’s difficult to help one understand the true journey we went through as I did on our facebook prayer website “Pray for Joey an Eli Bonura”. But in the end, it hurts my heart to add to it right now since Eli is no longer with us physically. The updates are all there, from the beginning and anyone is welcome to read. But I need to start fresh.

So, welcome to a fresh start. Meet my family. Meet my sweet loves…my husband Thomas and my precious baby boy Joey. Joey has quite a journey ahead of him. Our whole family does. We struggle with trying to sell our home before we go into foreclosure, we struggle with some who do not support us because they don’t “know and understand” us but we believe. We have faith that God will send us better days. I have always been honest and true, about my feelings, my worries, my anxiety, my faith. This is me, this is who I am.

I know God is still there, waiting for me to be ok again. Meet my baby boy Joey.

Joey is growing well. He is almost 10 pounds now and is getting better and better at finding his little hand. He has a shunt that shows buthis hair is growing longer every day. He gets physical therapy as we prepare for the possibility of cerebral palsy and we are working very hard to make sure he is compensating with the loss of vision in his left eye. He is so precious and sweet. He loves kisses and is starting to go a 5-6 hour time where he sleeps without waking during the night. He is alert and vibrant during the day and the other day, I was lovingly talking to him and he smiled right at me! He does smile often but it hasn't happened again right at me.

Oh how I love my sweet sensitive Joey and I hope that you will too!